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Today we've published on our about page a new definition of the world we want to see, explaining how we are working to achieve our aims.

We wrote this short statement of our aims, objectives and values after asking all our supporters what you thought we should be working on, and what you thought our values are. We think it's a real call to arms:

We uphold human rights like free expression and privacy. We condemn and work against repressive laws or systems that deny people these rights.We campaign, lobby, go to court – whatever it takes to build and support a movement for freedom in the digital age. We believe in coalition, and work with partners across the political spectrum to support an informed population of Internet users who understand and fight for their rights in the digital age.We scrutinize and critique the policies and actions of governments, companies, and other groups as they relate to the Internet. We warn the public when policies – even well-intentioned ones – stand to undermine the freedom to use the Internet to make a better society.

It's the first major result of our strategy work, which this year has involved ORG talking to all of our supporters, local groups, partners and allies, as well as our staff, board and Advisory Council about our work and our future.

On April 12, many of our supporters and volunteers will be meeting to discuss our future. We're looking at quite a few options for new projects and initiatives, and thinking hard about how we grow over the next three years.

We want to involve you in two ways. Firstly, if you're a long term volunteer and want to come to the strategy day, let me know as there are a few places left. Secondly, we will be sending a poll to all our supporters asking you how much you like the new ideas. This will help inform our discussions in April.

Asking for comments and feedback on the code is a positive move, but the survey is not balanced to capture a variety of opinions. For example it asks whether the code explains the benefits of anonymisation, but not whether it explains the risks. And it doesn't.

The survey also has space for comments on the style and language of the code, but not on the content, which is surely at least as important.

The code itself is a good initiative but it falls short in certain areas. For example, some of the concepts are not properly explained.

“We draw a distinction between anonymisation techniques used to produce aggregated information, for example, and those – such as pseudonymisation – that produce anonymised data but on an individual-level basis.”

Presenting pseudonymisation – which involves converting transparent identifiers such as names into reference codes - as a proper anonymisation technique could lead to dangerous releases of personal information. In many contexts we would argue that pseudonymous data should have the same levels of protection as fully identifiable data.

In general, the code presents an excessively optimistic narrative that could encourage risks to be downplayed. The current debate on care.data is a good example of this.

The code should stress that effective anonymisation is possible, but it is hard to achieve and we should be very careful when releasing data.

Since 5th June last year we have read a series of revelations about the reach and power of our surveillance agencies. We've learnt about blanket collection of all sorts of digital information and the sharing of this data between the US and UK.

Our intelligence agencies do vital work for which we should all be grateful and which we all benefit from. But for Open Rights Group, and many others like us, the stories showed surveillance agencies exploit laws that have been rendered out of date by technology to collect too much information about too many people with too little democratic oversight.

The revelations can leave you feeling a bit powerless. You know something seems really wrong, but can you do anything about how our most secretive and powerful institutions work? How do you even begin to change how so many laws, programs and oversight bodies work?

We've got new demands for how the government can act quickly to make sure surveillance carried out in our name respects our privacy rights.

We're setting out six powerful principles that we want surveillance law to stick to. We're calling for an inquiry to be concluded before the election, and for the government to then proceed with legislation that upholds the principles we've set out.

This need to start happening now. Not in a few years after some drawn out mega inquiry, or in three Parliament's time. The government has to start listening now, accept the need for reform and commit to changing how our intelligence services work and are governed.

We've got an ambitious plan. But we can do it. We will need your help. We hope you'll want to join us and be part of such an important campaign.

You can help now by signing our petition and emailing your MP. You can do both at our new campaign site. Tell your friends, tell your family, tell your colleagues.

On Tuesday, internet users all over the world are standing up to say no to GCHQ and the NSA's mass surveillance. Over the last eight months we've heard plenty about how intelligence agencies monitor us on the Internet.

As part of this global day of action against mass surveillance, Open Rights Group, Liberty, English PEN, Privacy International, Article 19 and Big Brother Watch are coming together to launch Don't Spy on Us.

On Tuesday, we'll be launching Don't Spy On Us and calling for:

an independent inquiry into UK surveillance to report before the General Election

a new law that will fundamentally reform the way GCHQ carries out mass surveillance

In the meantime, could you promise to send a Tweet or post a Facebook status on Tuesday to help get the word out about the Don't Spy On Us campaign? If enough people make that promise, we'll be able to make Don't Spy On Us appear on social media timelines around the country and the world.

Open Rights Group and the other campaign groups working with us on the Don't Spy On Us campaign were integral to getting last year's Snoopers Charter blocked. But after the Snowden revelations, we know that the challenge of stopping GCHQ's mass surveillance is much greater.

Hundreds of people tweeting and posting Facebook statuses at once on Tuesday will really help grab lots of people's attention - people who don't always pay attention to privacy concerns and mass surveillance.

We're relying on all our supporters to spread the word about the campaign and build the pressure on the decisions-makers in Government.

This is the biggest spike in membership in a single month that we've seen since hundreds of people joined after the passing of the Digital Economy Act – which is still not implemented, thanks to your work showing how bad the legislation is. And yesterday, Parliament continued their work repealing the dangerous website blocking powers the DEA still contains.

ORG's supporters have grown from just over 1500 a year ago to past 2100 today – that's 40% growth in a year. Your funding means we can now start a full-fledged legal track, as well as continue the campaigning work we do on privacy, surveillance, filtering and free speech.

We've ambitious ideas for the future: there's much more to be done. We need greater depth to our policy, campaigns and expertise. We've been thinking about the kinds of changes we need to see – so more of this later. For now, we'd just like to say thank you to everyone who joined, rejoined or increased their contribution. You've made an enormous step forward possible.

We are lawyers who work with the Open Rights Group. You and the Open Rights Group can make a huge difference in the UK and European courts, defending your digital rights.

That’s why we are asking you to join ORG today, so they can hire a Legal Director. We need just a few more people to hire them full time.

But perhaps it’s best if we explain in our own words:

“The appointment of a legal director will make a real impact on the work of the Open Rights Group. It has never been more important to have informed interventions at the High Court and appeal courts on matters to do with digital rights.

“I know from my own experience as appeal solicitor in the “Twitter Joke Trial” the difference it makes when courts properly understand technological issues, especially when imposing criminal liability on the citizen”

David Allen Green, solicitor at Preiskel & Co LLP and member of Advisory Council, ORG.

“In the US, digital freedoms have been fought for and won in historic legal battles such as Reno v ACLU and countless smaller cases where the EFF and other digital rights groups have helped take on cases involving freedom of speech online, privacy online, cyber- harassment, vindictive copyright enforcement and so on. In the UK until now civil society has never had the capacity to take such important legal cases. Help ORG hire a Legal Director to change this and bring UK law into the 21st century.”

Dr Lilian Edwards, Professor of Internet Law at Strathclyde University and ORG Advisory Council

“ORG is a vital partner with EFF in addressing mass surveillance. Just as GCHQ and NSA work together, it's increasingly critical that we strengthen the capabilities of groups on both sides of the Atlantic to push back to regain our privacy and free speech.”

Cindy Cohn, Legal Director, Electronic Frontier Foundation

“There is no doubt that Parliament and the Courts have struggled with the challenges posed by the explosion of online interaction and the growing importance of rights in an increasingly digital world. Decisions made now will shape the approach that the Law takes for decades and possibly longer. This is a key moment. ORG speaks up for those whose interests are usually discounted when it comes to governmental and judicial policy making – it speaks up for you and everyone else who lacks a vested interest and a lobbying budget. A Legal Director is exactly what ORG needs at exactly the time we all most need ORG.”

Seán Jones, barrister at 11KBW Chambers

“The law can be an instrument of repression but it can also be a powerful tool for change. Your support for ORG's Legal Director post can make a real difference in the fight for digital freedom in the UK.”

Eric Metcalfe, barrister at Monckton Chambers and former director of human rights policy at JUSTICE

“Please help with the appointment of a Legal Director for the Open Rights Group. In my personal experience, ORG have initiated valuable interventions on civil liberties issues affecting millions of adults in the UK, such as filtering.”

Myles Jackman, Law Society Junior Lawyer of the Year and Consultant Solicitor-Advocate at Hodge Jones and Allen LLP

"As an American lawyer I've seen how important it is to have boots on the ground to defend civil liberties in court. Even when the underlying law itself is designed to protect civil liberties, being able to appeal directly to the courts may be the only way to keep them protected not just in theory but in practice."

Cathy Gellis, US Tech and civil liberties lawyer

“I have had the honour of working with ORG to do some marvellous work: both intervening in high profile cases and working behind the scenes to help individuals who have fallen foul of laws that were not or should not have been drafted for the modern digital world. I am convinced that ORG could do so much more with the assistance of a full-time legal director and I am excited by all the things that ORG could do if it had one. Money pledged for this purpose will be money well spent.”

Francis Davey, Independent barrister and ORG legal volunteer

We need just a handful more people to join to make this project happen. Please help us hire a full time Legal Director by joining the Open Rights Group today!

I’m writing this blog today ORG has an unprecedented opportunity to make a difference to the world's digital future -- a chance to argue before the European Court of Human Rights in coalition with Big Brother Watch and English PEN, in a crucial case over GCHQ's lawless program of indiscriminate, total Internet surveillance.

I was working for the Electronic Frontier Foundation when I helped found the Open Rights Group. EFF is an American digital rights group with a long tradition of winning important fights, using a variety of innovative tactics — but one of the most effective tools in its toolchest was "impact litigation."

Impact litigation uses consitutions as a back-door into the legislative system. The rich and powerful can buy themselves any number of unjust laws through the front door, or even commit crime by impunity by declaring themselves to be above the law.

That's where impact litigation comes in. Rather than trying to get 20,000,000 or so voters to scare the pants off of elected representatives and force them to do what's right for the people they represent (rather than the powerful interests by whom they've been captured), an impact litigator asks a judge to find the conduct unconstitutional, and thus illegal. At the stroke of a pen, a bad law can be killed in its tracks.

Impact litigation can be costly. Top lawyers don't come cheap, and the government has the power to drag out legal action for years, trying to bankrupt its opposition.

But impact litigation can win victories that simply can't be won in any other way. In areas where rallies, phone calls, letter-writing and logic hold no sway, a single, well-placed legal action can move mountains.

You'll have seen that the European Court of Human Rights is forcing the UK government to reply to the case that we brought over GCHQ's warrantless, lawless, mass-scale Internet spying. With this court action, we have to chance to cut through all the self-serving secrecy and scare-stories about terrorist bogeymen, and straight to the heart of the matter: the right of the law-abiding people of all nations to go about their daily lives unmolested, unsurveilled, undocumented and free.

That's where you come in. Supporting a full-time legal director is a major step for ORG, a new tactic in our arsenal, a way to make a real and lasting difference.

The NHS has been going through some fairly radical changes. This will affect who can see your medical records and what they can do with them.

Where your records will be stored, the people deciding who has access to them, the reasons people can access them - all of these things are affected by what's happening.

And it is happening now.

You have the opportunity to opt out of your medical records being used in this way. But you have to actively opt out. If you don't want your medical records to be part of the new system from the start you need to opt out soon.

The NHS are making some big changes to how very sensitive information about us is handled - information about which many people feel understandably protective and worried.

The story about what is happening is fairly long. But most simply put, your medical records, in identifiable form, will be extracted from GP surgeries. They will be held centrally and then made available, in certain circumstances, to a variety of people and institutions from university researchers to think tanks and businesses. The data will be available in different forms for different purposes - sometimes 'anonymised', sometimes 'pseudonymised', sometimes identifiable. There will be various conditions that those wishing to apply for access to the data must meet.

medConfidential say this will "fundamentally alter the concept of doctor-patient confidentiality" - which sounds fair, if only because now there are many more people involved in deciding who can access your medical records, and more people who can potentially do so.

Like medConfidential, lots of people have become extremely concerned about the way these changes are happening. The issues include how much of an informed choice people can make, the faith placed in 'anonymisation' techniques, and who will be able to access records and for what purposes.

What choice do we have?

One of the most pressing issues is whether we have a proper choice about whether our records are part of the new system.

Well, you can opt out. If you don't do anything, your data will be uploaded to the new system. NHS England say you can change your mind later.

(Update: Phil from medConfidential has pointed out that whilst they say you can change your mind, once your data has been uploaded to HSCIC it will never be deleted and will always be available for subsequent matching on its systems.)

Of course you can only opt out of something that you know is happening. So the opt out approach relies on people knowing what is going on, and having some way of telling the health service what decision they have taken. That places a responsibility on the NHS to provide people with clear and comprehensive information, and to try to make sure people see it.

The NHS fell short of the mark here. Their approach looks like it is more about selling the idea and minimising opt outs than helping people come to informed decisions.

They are sending leaflets, supposedly to every household in the county, with an overview of the benefits of sharing more information. The leaflet is also available as a pdf from the NHS website, with more detail on an information page. Dr Geraint Lewis, the NHS England Chief Data Officer, has posted an article explaining more about how the new system will work and its benefits. There's an FAQ pdf too, which gives a little more detail.

The leaflet and website read more like a sales pitch for the new system, and are both light on specifics. The leaflet also implies people need to make appointments with the GP surgery to discuss options for opting out - however this is not true. An appointment is not necessary.

medConfidential and Dr Neil Bhatia have both pointed out some of the shortcomings with the leaflet and information campaign - some of the things that it doesn't mention or explain properly.

It has been left to medConfidential, Dr Bhatia and others to provide people with clear, detailed and comprehensive explanations about what is happening, and to make it absolutely clear how people can opt out of the scheme. Following the pressure they have applied, it seems the NHS is trying to up their game.

medConfidential and Dr Bhatia also raise extremely important questions about other aspects of the system, including the problems with a reliance on anonymisation, and concerns about who will have access to identifiable information and for what purposes (see medConfidential's explanation of how paid for access to information will work.)

Here's some more useful articles with information and opinion about what's going on:

2. The Guardian this week reported on concerns about access that insurance and drug companies.

3. Jane Fae on openDemocracy, arguing that we're in danger of sleepwalking into a big information grab.

4. Ross Anderson on opting out - he notes that "if you don't opt out your kids in the next few weeks the same will happen to their data, and they will not be able to get their data deleted even if they decide they prefer privacy once they come of age."

6. Roy Lilley, giving a run down of what he sees is happening and why the Department of Health could have run the opt out better

7. An article about an Early Day Motion tabled by MP Roger Godsiff in the House of Commons, following news that 2,400 people have called the customer hotline with concerns about the system since January 6th.

Of course there are benefits to various innovative uses of medical data. And it's obvious that there are ways to improve how health related information is used.

But with such fundamental reforms patients should be at the heart of the system, and reforms should be happening with their consent.

Whatever you think of the merits of the new system, it's hard to escape the conclusion that the way the transition has been handled so far is below standard. Looking at how patients' attitudes and opinions are being built in to this process, it seems the NHS are trying to minimise how many people opt out because they are institutionally so convinced of the benefits of greater data sharing.

This is probably counterproductive, too. It will surely, for some people, raise doubts about the principles and motivations guiding future decisions about how their medical data will be used.

If you want to opt out, you can use the forms that medConfidential and Dr Bhatia have made available. You can change your mind at a later date.

More background to relevant NHS changes

As mentioned above, medConfidential have produced a helpful guide to what's happening, including information about changes to the NHS and who is in charge of overseeing the use of health records.

The King's Fund have produced an explanation of what's happening to the NHS in the form of an animated video, which is helpful for background on what the NHS is going through.

Open Rights Group exists to preserve and promote your rights in the digital age. We are funded by thousands of people like you. We are based in London, United Kingdom. Open Rights is a non-profit company limited by Guarantee, registered in England and Wales no. 05581537.